Autism and Socialising

I avoid socialising like the plague because I am socially challenged, phobic, whatever. However, on occasion, I’ve forced myself to be sociable in order to try and fit in, often with disastrous consequences.

This was one such occasion..

Sometime in the 1990s

I found myself agreeing to meeting up with my work colleagues for a drink.

Needless to say, NIGHTMARE!

I don’t remember how I got to the pub. What I do remember is feeling all those fight or flight symptoms that my body produces when it thinks it’s in danger.

The danger of having to walk into an unfamiliar building.

The danger of having to locate my work colleagues without the aid of a mobile phone.*

The danger of having to act ‘normal’.

I walked into the pub. I was possibly only standing there for a few minutes, but it might as well have been hours. I didn’t know what to do. I couldn’t see any familiar faces. I was aware I was being stared at. Plus, my shoes were pinching the shit out of me. I was just about to adopt the flight aspect of the stress response when I saw one of my colleagues waving at me.

Flight was no longer an option.

There were seven girls including me. I say girls – we were all in our 20s but I was the oldest. I was also the only one who was married and who had children so I was already on a different ‘page’, as it were.

I refused a drink. This was met with some funny looks. I mean, who refuses a drink in a pub, right?

I sat fiddling with stuff in my handbag and concentrated very hard on not throwing up.

No doubt somebody offered me a crisp. It was a pub. People offer crisps. It’s what people do.

I’d have said: ‘No thanks’.

I’d have thought: ‘I’m actually struggling to swallow at the moment, so I might choke on the fucking thing and one of you might have to do that humping me from behind move to get me to cough it up. That or phone for an ambulance.’

Not that I overthink things at all..

I just sat there trying to nod and smile in the appropriate places, as you do.

After about five minutes (which felt like five hours) a man appeared in front of me, smiling, and said, “Hi, (my name) you remember me don’t you?”

All I could manage was a vacant stare.

I’ve had random people approach me in the street and say stuff like, ‘SMILE LOVE! IT’LL NEVER HAPPEN!’ so I wondered if this was one of those times?

Or maybe he was pissed?

The difference was that THIS man knew my name and was coming out with details about me.

My brain was working overtime trying to place this person. Why couldn’t I remember? What was wrong with me? Was I having a stroke?

What happens when I’m stressed is that my words don’t come out right. I mix them up or say something I don’t mean to say. Or the words don’t come out at all. I need time to process before I speak in social situations. There was no time here. I was in a situation and my brain couldn’t handle it.

My body went into panic mode.

I could feel the stress response flooding my entire being. My face was burning and I could feel cold sweat running down my upper arms. You know those embarrassing sweaty patches that appear on the underarms of your shirt? That. With bells on.

My heart was thumping out of my chest.

My mouth was dryer than a camels hoof.

I wanted to vomit.

I needed a really BIG wee.

My eye tic kicked in.

My body was reacting as if a drooling tiger was standing in front of me. I was powerless to stop what was happening to my body. Nor could I run from it. I had no option but to endure it..

In the background, I that noticed the other girls were nudging each other doing that giggling thing that a lot of girls do. They looked at me, then they’d look away and giggle some more.

*confused face*

I wanted to run as fast as my size fours would carry me but I couldn’t move.

During fight or flight some people run, others fight. Some just freeze.

I froze.

I’m a freezer.

Freezing is generally a primeval attempt to stop a predator from seeing you. The problem was that the predator had not only seen me, but was tucking into my innards – theoretically speaking. I think this means that should I find myself in the direct line of an articulated lorry – I may quite likely be run over.

I don’t remember anything after that, as is the case with anything traumatic.

Some of you might read this and think ‘Traumatic? Oh get a grip you silly cow!’

I get that it sounds ridiculous but you’ll either understand this or you won’t but the definition of traumatic is deeply disturbing or distressing.

To me, it was traumatic and my body reacted accordingly.

Some days later, one of the girls confessed that they’d asked the man to act as if he knew me – for a laugh.

I was the joke.

Am I missing something here?

Were those girls being funny?

Or were they being mean?

To this day, I don’t know.

I never went out with them again.

Why would I want to?

I didn’t understand their language. They literally giggled at EVERYTHING, which I found irritating. I don’t giggle. If something is funny, I laugh. Sometimes until a bit of wee comes out. Granted, some of this is down to a compromised pelvic floor but mostly it’s because I laugh from my belly. Giggling to me is like water crackers, as in, what’s the point?

So, I was being publically humiliated and apparently it was hilarious.

I get that I am different. I’ve always known it but I’ve tried my hardest to fit in. The trouble is that the harder we try to fit in, the more we make ourselves stand out.

Back then I didn’t have a clue why I couldn’t fit in.

Now I know it’s because I’m autistic.

I’m the misfit.

The odd one out.

Or I was..

Then I found my ‘tribe’.

People who get me.

People who understand everything I say and do.

People who don’t look at me as if I am a moron.

People who will read this post and think, ‘Yeah, me too!!!’

People like me.

I go back through my life and wonder, could have done things differently? The answer is no. My brain will always react the same way because it’s wired up differently to the neurotypical brain. I am what I am and all that shit and as Gloria Gaynor says, ‘What I am needs no excuses’.

Me, the reboot, doesn’t push myself to socialise like this anymore. These days, I reserve my energy for people who deserve it. I no longer say yes to things I don’t want to do in order to fit in. I no longer make excuses, nor do I have to provide an explanation why I don’t want to do something. I politely decline the offers (not that there are many) and mentally high-five myself for putting myself first.

I bang my own drum
Some think it’s noise, I think it’s pretty

I Am What I Am ~ Gloria Gaynor

 

 

 

 

 

 

 

Christmas and the Autistic Child

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Most children like Christmas right? For many on the autistic spectrum, Christmas is a stressful time of year. The inevitable changes to routine are enough to send some children spiralling into one meltdown after another..

Same for autistic parents.

The Boy’s anxiety has been climbing for weeks. As soon as things change at school his behaviour deteriorates. He’s on a VERY short fuse and the simplest of requests, like taking his coat off, has him throwing stuff and stomping off upstairs screaming that he wants to DIE. He’s eight going on thirteen only this is him BEFORE the hormones kick in!

Can you imagine when they do?

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Trip hazard? Or my son when the testosterone kicks in?

The Boy’s need for me is ever greater as he battles with a brain that struggles to cope with Christmas. He likes Christmas but struggles with it just as he struggles with a lot of other things he likes.

There are no decorations up at our house yet as we’re trying to keep stimulus to a minimum and my anxiety is so bad that the mere thought of them makes my heart race. The control freak within me struggles to allow other people to do it and in the past when I have let the kids, er, ‘help’, I have stood there fighting the urge to rugby tackle them to the floor in order to prise the baubles from their clammy little hands. *whispers* I re-did it once they were in bed. It’s something I don’t like about myself but it’s a pathological need for certain things to be aesthetically pleasing in my eyes.

When it comes to visiting Santa, forget it. It’s a sensory nightmare.

Queuing = Hell.

Noise = Hell.

Migraine inducing fairy lights = Hell

Sitting on Santa’s knee. Do they still do that? = Hell.

I hated it as a child. The Boy managed one minute in a queue once and we had to leave. Do your child and yourselves a favour and go to an autism friendly session where the visits are timed, you can take your own present. Visiting Santa should be a pleasant experience for every child, no?

There are things you can do as a non-deranged parent to make things a little easier for your autistic child.

Decorations

  • You can involve your child in buying decorations or letting them help you to put them up.
  • Introduce the decorations gradually. It’s probably best not to have it looking like Santa’s Grotto if your child gets easily overstimulated.
  • Give some thought to your Christmas lights. If your child is very sensitive, a migraine inducing strobe effect probably isn’t the best idea. Static or gentle fade in and fade out lights will be more appropriate.
  • Use countdowns for putting the decorations up and taking them down.
  • Use social stories and visual calendars.

Visiting Santa

  • Check your local papers/social media for autistic friendly Santa-sessions

Presents

  • Mountains of presents will overwhelm most autistic children so it’s best to limit how many they get or don’t put them all out on Christmas Day.
  • If your child has sensory issues pay attention to the paper you use to wrap the presents with.
  • If unwrapping make them anxious then don’t wrap them at all.
  • Place a familiar toy next to the new presents.
  • Try some gentle classical Christmas music in the background especially if classical soothes them normally.

Family

Don’t feel under pressure from your family. If you know your child can’t cope with a big family get together on Christmas Day, then don’t be afraid to tell them to sod off – albeit politely. Your child’s well-being has to come before Great Aunt Ada parking her arse on your sofa all day scoffing the Quality Street eh? Life is different when you have an autistic child. If people get it, great. If they don’t, educate them until they do get it. Maybe give them a book on understanding autism as a Christmas present?

Familiarity

Christmas Day is just the three of us. There are no visitors. There is no Christmas dinner with party hats and other such paraphernalia. The Boy has his usual food and bedtime is the usual time with the usual ritual of a story and his Classic FM.

The Rules are that there are NO rules when it comes to autism. Each person is different. Some love Christmas, some don’t. All autistic people are affected but not necessarily in a negative way.

Me? I find Christmas stressful BUT it’s also the season of fairy lights and I BLOODY LOVE fairy lights!!

As a child I used to lie on the floor under the Christmas tree and stare at them for hours on end. My Nan, having downed a few brandies, would say, “You’re a funny little girl” I used to wonder why she was calling me funny when I hadn’t said or done anything funny. Now I know she was calling me weird. MY OWN GRANDMOTHER!!

Christmas is difficult for me in ways which most people wouldn’t understand. I’m not a Christmas hater – it’s just that there is too much going on and that sends my anxiety orbital. Social media is crammed with Christmas. TV is bombarding us with adverts/mini-movies for the hard sell and it gives me a headache. If I could cherry pick bits of Christmas it would be lights, carols and the act of giving. You can keep the crowds, commercialism and my pet peeve, ‘Secret Santa’.

I don’t suppose it helps matters that my father decided to shuffle off his mortal coil on a Christmas Day. To lose someone you love on any day of the year is bad enough but to lose them on Christmas Day is epically crap. The image of Dad’s lifeless body while Noddy Holder screeched “IT’S CHRISSSSSSSTMAAAAAAAAAAAAAAAS” is forever seared into my memory and while I fight to bring forward the memories where he was the life and soul of Christmas, this one always wins.

As regards The Boy, we try to keep things as close to normal as is possible. Whatever ‘normal’ is.

Header Image via Creative Commons

 

 

Not Being Me

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“Follow your inner moonlight; don’t hide the madness.” Allen Ginsberg

Throughout my years of blogging I have always made it clear that I have life-long issues relating to social communication and sensory issues.

I was a misfit from the moment I started school at five years old. Why five? Well because it was just me until then – me, the Golden Labrador next door and my rather fabulous inner world. I had no reason to know I was different.

Since then life has been difficult at best. At worst, it’s made me ill.

I’m ill now having hit a crisis point with the general anxiety disorder I’ve had for the last three years.

I have always had anxiety right from as far back as I can remember. As a child I was generally THAT pale I looked as if I’d been exhumed and I had one ailment after another. I didn’t understand it was anxiety at the time and I feel sorry for that little girl because as bad as I feel now at least I know why I feel like I do. Little girl me didn’t have a clue and was very scared. I couldn’t tell anybody. How could I when I didn’t know how to?

I don’t know what it’s like NOT to have anxiety in some degree or other.

The things that most people do effortlessly are challenges for me. As soon as I go through the front door I have to pretend to be normal, whatever normal is. All I know that after 40 odd years of observation, on a good day I can pass for ‘normal’. On a bad day you’d be sending round the nutter van. This is because pretending to be normal takes effort and it’s exhausting. It exhausts body and mind and after all this time, well, I’m knackered.

Online I get to communicate without the problems I get when faced with actual human beings. The barrier between me and the outside world allows me to interact in a way that I’m unable to in life without making myself stand out. So what I am going to say may come as a surprise to people who interact with me online..

You see, for most of my life I have been aware that I am different but I’ve never known why. I must have spent hundreds of pounds trying to find myself within the pages of self-help books. Bouts of anxiety and depression over the years have led to therapy but therapy for what?

I never knew what was wrong with me and it REALLY bothered me.

My list of problems is ENORMOUSLY LONG but here are a few things.

Things like..

Avoiding answering the door or the phone.

Being unable to walk into a room full of people.

Certain materials make me feel so irritable and uncomfortable. (Nylon? *boak*)

Struggling with eye contact until I was in my 30s.

Having too much empathy.

Being constantly bullied as a child and teenager.

Not being able relate to most other girls.

People calling me weird including the local pisshead and it must be bad when the local swiller tells you you’re weird.

Shutting down when overwhelmed. (selective mutism)

Escapism being VITAL to my mental well-being.

Soaking up people’s moods up like a sponge. (You’re having a shit day? Then so am I)

My body reacting in the same way no matter how many times I do something.

Why I am obsessive in thoughts and interests.

Why my ‘imaginative’ play only ever involved imitating what I’d seen on TV programmes or films.

My mood going from euphoria to despair and everything in-between in any 24 period.

Having to observe and copy in order to fit in.

Why I have picked at my skin so much that I have scars.

Always feeling a sense of unease. (WE’RE DOOMED!)

Always feeling the odd one out.

Catastrophic thoughts about everything.

Questioning why I am here.

ALWAYS feeling that I was not meant for this world..

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Moi.

You get the picture?

So I had resigned myself to being a weird sod. One of life’s oddities. A misfit.

Then we took The Boy to be assessed for autism and from the questions they were asking I knew then that I was autistic.

LIGHT BULB MOMENT!

For almost four years I debated whether I needed a formal diagnosis. Many people are content to just know that they are autistic and trust me, most people know. For me, it wasn’t that simple because some of my issues have become worse as I’ve got older and one of my fears is being thrown into an old persons home where I would die within a day because of the social aspect.

Also, I needed validation.

So last year I was assessed and in February this year I was formally diagnosed as autistic and the relief is immeasurable. I’m not weird. It’s just that I perceive the world differently.

Last year I went to the autism show in Manchester and it was while I was there that I came across Peter Street. Peter is a national and international poet and was diagnosed late in life as autistic. Peter was one of the speakers on the day and spoke of his experiences at school and his diagnosis. Hearing his story helped me to make the decision to go for assessment because I could see how much it had helped him and he was older than me when he was diagnosed so I knew it wasn’t to late for me. So, thank you Peter.

Peter also passed round a poem which was written for everybody on the spectrum. I have this on my kitchen wall and read it every day..

Not Being Me by Peter Street

Childhood nights were dreams
of being a sheep
then up and out of a morning,
a quick check to see

if by any chance in the night
there had been a change
of being just like all my friends
and not the odd one out

like afternoon dance lessons
spent hidden
in the toilet
out the way because

I couldn’t dance the sheep steps
that’s why I dreamed
of being a sheep
so I could be like everyone else

I listened to this poem and cried because I understood EVERY word of it. How many times as a child had I prayed that I would wake up and be like everyone else? However, I wasn’t like everybody else and now I know why. All these years I’ve been fighting against my own brain so is it any wonder I feel so tired now?

So, as Mozzer from Manchester once said…what difference does it make?

Well, it just means that I have a formal explanation for why I struggle so much and hopefully I can get some support as I get older because I really am scared of having to live in Shady Pines and having to play bingo and shit. I would rather choke myself to death on my own false teeth!

I’m still me. It’s just that my reality differs from yours. That and I touch plugs waaaaay more than is healthy, y’know?

So there you are..

I’ve outed myself as the autistic human I am and have always been.

Thank you for reading.

Not Being Me poem used with kind permission from Peter Street.

Peter’s website

Listening To The Dark ~ A Selection Of Poetry ~ Peter Street

Images via Creative Commons

Spectrum Sunday